SSIEM 2023

Individual therapeutic trial of a rocking bed for a sleep disorder in a patient with a severe mitochondrial disease

Alexander Breuss 1 Marco Strasser 2 Jean-Marc Nuoffer 3 Andrea Klein 4 Christine Felder 4 Ruth Stauffer 5 Peter Wolf 1 Robert Riener 1,6 Matthias Gautschi 3
1ETH Zurich, Sensory-Motor Systems Lab, Institute of Robotics and Intelligent Systems, Switzerland
2Department of Paediatrics, Inselspital, Bern University Hospital, University of Bern, Switzerland
3Division of Paediatric Endocrinology, Diabetology and Metabolism, Department of Paediatrics, and Institute of Clinical Chemistry, Inselspital, Bern University Hospital, University of Bern, Switzerland
4Division of Neuropediatrics, Inselspital, Bern University Hospital, Switzerland
5Institute for Physiotherapy, Inselspital, Bern University Hospital, University of Bern, Switzerland
6Spinal Cord Injury Center, University Hospital Balgrist, Switzerland

We present the case of a 12-year-old male with a severe primary mitochondrial disease that caused movement disorder, ataxia and spasticity, progressive external ophthalmoplegia and cardiomyopathy, and severely disrupted sleep. Based on family reports, the patient experienced improved sleep quality and duration on night train rides. In response to this anecdote, we installed a rocking bed in the patient`s bedroom over a five-month period and conducted interventions with various movement configurations. These interventions included an immersive multimodal train-ride that simulated the experience of being on a train, with jerky movements created by superimposing sinusoidal movements with short high-frequency disturbances, combined with sounds. The study consisted of four two-week nocturnal interventions with one-week washout phases and a final four-week intervention to assess changes in intervention duration. We evaluated the impact of the rocking bed on various sleep parameters, pulse rate, caregiving effort, and subjective outcomes such as daytime sleepiness, restlessness, anxiety, fatigue, cognitive performance, and physical posture. Sleep duration increased significantly by 25% as captured through the Mini Sleep Questionnaire. The number of interactions with his caregivers during the night decreased by 75%, and the total nocturnal caregiving time was reduced by 40%, as computed through video recordings. Subjective fatigue, as measured by the Checklist Individual Strength, decreased by 40%, falling below the threshold of severe fatigue. Our findings indicate that rocking beds may be a promising non-pharmaceutical intervention for the treatment of sleep disorders in some patients with mitochondrial diseases. However, larger studies are now necessary to confirm the efficacy of this approach in broader populations and other disease conditions.